POTSUK

Hey, everyone. I hope you're all okay... I just need to vent a little. I hope that's alright...

I'm feeling a bit disheartened today. In the last 18months I've been exercising a hell of a lot more and really watching what I eat and drink. I feel pretty good for it and I'm steadily losing weight.

Recently I'd noticed that my vision has been getting worse - more blurry and quite a few more 'floaters' in my eyes. This morning I went to have my eyes tested. As expected, there was a change to my prescription. My astigmatism has worsened so I need a larger prism in my lenses.

Anyway, after he finished doing that part of the test, he looked at the back of my eye and told me that I have Background Diabetic Eye Disease. I know it's the early stages but I still feel really disappointed in myself. 😞😔

#chronicillnesswarrior #ChronicPain #POTS #POTSUK #EDS #NAFLD #LiverDisease #Migraines #BPD #Depression #Anxiety #InterstitialCystitis #Diabetes #Vent #Advice

Hey, everyone. I hope you're all doing well!

I just had a question to ask...

So, from 14th April and up til today, I had a raging sinus infection. My eyes were so swollen, and you could actually SEE my sinuses above and around my eyebrows and eyes. My whole face ached so fiercely and I often ended up in tears because of it. Which made things so much worse.

At night time, I'd crawl into bed at 9pm and according to my mother, I was asleep within minutes (she could hear me snoring faintly). Which is very weird, because I have pretty bad insomnia. It normally takes me hours to fall asleep and even then I usually end up having to get up to pee multiple times.

This isn't the first time my body has done this. Nine years ago I developed a very serious case of tonsillitis. My GP called an ambulance because my fever was at 40.0.0.2 degrees centigrade. For the entire of the ambulance ride I was drifting in and out of consciousness and by the time we arrived at the hospital, I started having seizures because my fever was so high. I don't remember any of this - I was so out of it. I had to stay in the hospital for two weeks, and for about 90% of my stay there, I was asleep.

This now happens every single time I get an infection. Doesn't matter what type, though. It could be a UTI, laryngitis, chest infection, winter vomiting bug, etc. It's like it knocks me out.

So, I guess my question is... Does anyone else have experiences like this? I'd love to know how you handle it and whatnot.

Have a great day, everyone!

#posturalorthostatictachycardia #POTS #POTSUK #EhlersDanlos #EDS #ChronicPain #chronicillnesswarrior #NAFLD #LiverDisease #IBS #BPD #InterstitialCystitis #ic #Migraines #Diabetes #Infection #Insomnia #jointhypermobility #Advice

Hey, everyone. How was your Christmas? Mine was pretty awful, honestly. I'll try and explain it as best as I can.

Around 4 years ago, my mum was talking to my big sister (her name is Dawn), and she told her about my health conditions/problems. Dawn then proceeded to accuse me of faking my health issues. Despite the many scans and test results clearly showing they are real. And then, shortly afterwards, she said that any gifts or presents I buy for people for birthdays/christmas (and everything else) are worthless because the money comes from a 'government handout' (disability benefits). After learning this, I refused to talk to her unless she apologises. So, we didn't talk for several years.

My little sister (Jess) gave birth to my nephew in 2021, and I love him very much. Since Dawn doesn't live near us, she was only able to visit this passed Christmas, and she stayed at Jess's house for two weeks.

Originally, before Dawn announced she would be coming, the whole family was going to go to Jess's house for Christmas dinner and whatnot... But once she booked her tickets and everything, Jess said that I wasn't allowed to go to the event. I wasn't allowed to spend time with the whole family. Which REALLY upset me. So much so, that I seriously comfort-ate for a couple of weeks. I was binge-eating whatever I could get my hands on. And I spent the entire of Christmas day curled up in bed watching stuff on my laptop. It was my first Christmas alone and I hated it.

Anyway, that leads up to the good news. I was really expecting my diabetes to be so much worse, and I was expecting to have put on a lot of weight. So, I reluctantly went for my weight and diabetes check last week. After they recorded my weight, they told me that since last July, I've lost 20lbs! And my HBA1C blood test came back yesterday - it's not worse! In July it was 63, and as of yesterday, it was 62. Admittedly, it's not much progress, but considering I was expecting it to be a disaster, I feel pretty good.

Anyway - I'm sorry for this rant, I guess. I just needed to get it out. Thank you for getting this far, though. Have a great day!

#chronicillnesswarrior #chronichealth #ChronicPain #POTS #POTSUK #EhlersDanlosSyndrome #EDS #NAFLD #InterstitialCystitis #BladderPain #BPD #BorderlinePersonalityDisorder #Familydrama #Depression #PTSD #Migraines #Diabetes #diabetic #WeightLoss

I have an appointment with Gastroenterology next Thursday (the 11th). It’s at the hospital. I’m terrified of picking up the Coronavirus. I have masks I can wear but I can’t help but feel like there’s a small chance of catching it still. My immune system is bloody useless at the best of times. I daren’t think of what could happen if I get this virus.

Do you guys have any suggestions?

#chronicillnesswarrior #ChronicHealthConditions #POTSUK #EDS #BPD #NAFLD #Diabetes #InterstitialCystitis

I should explain that four years ago I lost a job I loved because of my illnesses. I worked as a theatre support worker during operations at a nearby hospital.

I absolutely loved that job. I tried so hard to always be a model employee, to do my job well. But one day, during a kidney removal I started to suddenly feel hot and tingly all over. When I woke up I was in a hospital bed; the nurses and staff in the operating theatre had carried me onto a trolley and sent me around to A&E.

I discovered soon after that accident that I’d developed Postural Orthostatic Tachycardia Syndrome... I was given time off work but eventually theu decided to cut
me loose. And along with the POTS my bladder condition (insterstital cystitis) started to flare up and I ended up on morphine for a while. Luckily, I managed to kick that habit and now I’m taking Dihydrocodeine for my bladder and the joint pain I get from Ehler’s Danlos Syndrome.

Naturally, after I lost my job I was devasted. I fell into a deep depression. My health continued to get worth. It seemed like every time I went to the hospital for a check up, I was told I had something else wrong with me. Like Non-Alcoholic Fatty Liver Disease thats turned into Cirrohsis, and shortly after THAT diagnosis I was diagnosed with Type 2 Diabetes and I’m currently waiting for an Endoscopy on my stomach because I seem to have nearly all the symptoms of stomach ulcers.

I started to neglect myself. I didn’t take my medication, I stopped looking up and down the street before crossing the road, I stopped showing/bathing regularly. I’d go weeks, (which is gross - I know) without cleaning myself up. Everything was so exhausting. And I just didn’t have the energy.

A few weeks ago, however, I decided to start taking care of myself. I started taking my medication on time every day, I started bathing three times a week (our boiler is small and there are 5 of us in this house), I started styling my hair and putting on my face creams and wearing a little bit of make up. I feel good. But even more than all of this I’m exercising at least once every other day on my new bike.

I know these things are so small and don’t mean much... But I’m so proud of how far I’ve come.

#chronicillnesswarriors #ChronicHealthConditions #POTSUK #EDS #NAFLD #BPD #InterstitialCystitis #Diabetes #feelingbetter #Proudofmyself #Pleased #Being Sensible #LosingWeight #Cycling

For the longest time, I didn’t take my meds at the time I was supposed to. I was always late taking them. But for the last month, since I was put on Gliclazide (a diabetic medication used to lower your blood sugar quickly) I’ve been taking my medication religiously. At the exact right time or on the dot. And I feel so so much better for it.

I’ve been cycling for at least 20minutes nearly every day since I bought the bike on the 19th May. I feel so much stronger. It’s gotten to a point where I actually like the ache that’s left in my legs after I’ve finished cycling.

Just being able to do something that helps my body AND have it be something I really enjoy is amazing. I don’t feel lazy anymore. I don’t feel useless and powerless. I’m truly happy.

#chronicillnesswarrior #ChronicHealthConditions #POTS #POTSUK #EDS #BPD #NAFLD #Diabetes #InterstitialCystitis #Exercise #Bike #Cycling #feelingbetter #BeingGood

It’s been three days since I picked up my bike. I’ve gone out every day on it but I don’t think I’m pushing myself far enough - I don’t have any muscle aches or anything. Which is crazy! I haven’t ridden a bike in probably 10 years or more!

I feel like I SHOULD be aching a bit, and that since I’m not, I’m not pushing myself hard enough to get any benefit from it. My mum says that she’s aching all over from it, but she’s doing less than me. It’s odd.

But I’m loving going out for bike rides. I love the freedom I get with it. 😊

#chronicillnesswarrior #POTS #POTSUK #EDS #BPD #NAFLD #InterstitialCystitis #Diabetes #Cycling #BikeRides #Exercise #freedom